GK Tumor re-growth possibility?

[okiesandy]

Gary,

I certainly perked up when you described your hearing loss. Earlier in the year I was diagnosed with an AN in my left ear.  It begain with vertigo and a hearing loss that happened over a three day period. I was put on steroids and had a MRI. The hearing loss was thought to be because of the AN. The hearing in the left ear did not return. Then 8 weeks ago I had the very same symptoms as you had in my right ear. Stuffy ear, tinnitus, loss of voice perceptoin.  Again on steroids and this time a test for Autoimmune Ear Disease. My right ear hearing come back. The test came back positive for AIED.  My doctor thinks there might be some  connection to Auto Immune Disease and AN. Symptoms are the fluctuating hearing and return of hearing with early treatment with steroids. Please do ask your doctor to test you for this. Immco Dignostics, Inc will supply the test kit and do the testing. It is the only place that I know of that will. You may be risking your hearing over something that is not the AN.

[GM]

Okiesandy,

Thanks for the suggestion.  I actually was tested for AIED and it came back negative....  Since you do have this disease are you to stay on the steroids for a longer time?  What is the long term treatment for this for you now?

Also...man those steroids made me feel pretty squirrelly for a few days...jittery, couldn't sleep, even emotional and I'm not like that...   I sure am glad I'm on the step down dosage.  The ENT doc just thinks that my AN caused this "event"    I called it my "ear tantrum" 

Gary 

[ppearl214]

Gary,thank you for sharing this.... many have been saying to me about "just get the damn thing out since it doesn't belong there" is the approach to consider, yet... I'm just now learning more and more (thanks to this site) about cyber & GK..... your post here was very helpful to me in understanding another option rather than surgery and would love to learn more about the cyber/GK processes... will look here for links or if you have any to share, I'll take it!  Thanks again!

Jamie,

The reason some people elect surgery is that they want this "thing" out of their heads.  Also they may be suffering substantial side issues (migraines, vertigo, even passing out!).  If the tumor is pressing on the brain stem and is causing life threatening issues...then it's surgery time...period.  Also, don't forget some people are limited as to what their insurance will cover.

I too am a Gamma Knife patient.  My tumor was originally measured as 1.8 cm and after treatment in Nov of 2003 it swelled slightly to 2.0 cm.  Since my MRI in April of this year (I've had an MRI every 6 mo), it's holding steady at 2.0 cm...and it is showing signs of darkening in the center. 

Ironically I was a happy camper pressing along in life until two weeks ago when I had a reality check of ...HEY this things is still in here and can still cause issues.  I woke up and couldn’t hear at all out of my left ear.  It felt full, clogged, garbled sound, and increased tinnitus.  Wow..I wasn't prepared for that.  I even had measurable word recognition and hearing loss as a hearing and word recognition test was performed.  Fortunately, I was aware of some paths to follow from other posters from another site I belong to...a poster named Russ.  He had mentioned steroids and I ran it past the doc.  Well the clogging has subsided, word recognition and hearing level are almost back to what they were before the clogging incident.  The tinnitus still has increased levels at times, my hope is that it too shall pass as my steroid intake level decreases.

What I'm trying to say here is that those who chose surgery did so because they felt that that was the best possible solution for them, some still suffer side issues.  Until recently I thought I'd be side issue free...I awoke with a new appreciation for the hearing I have every day.  I got to live in a surgery patients world for a day or too with the clogged ear and noise bombardment from a single ear.  It can be overwhelming. 

Gary

[GM]

PPearl214,

Here's the link to the University of Virginia where I had my radiosurgery:

http://www.healthsystem.virginia.edu/internet/neurosurgery/gamma-knife-new.cfm

...another good site is on Yahoo at:

http://health.groups.yahoo.com/group/Acoustic_Neuroma_Awareness/

You can chat with surgery and radiation patients there...Gary

[ppearl214]

Thanks Gary! Will definately check out these links and see what is offered. Lots of info to absorb and I really appreciate the help!

Phyl

PPearl214,

Here's the link to the University of Virginia where I had my radiosurgery:

http://www.healthsystem.virginia.edu/internet/neurosurgery/gamma-knife-new.cfm

...another good site is on Yahoo at:

http://health.groups.yahoo.com/group/Acoustic_Neuroma_Awareness/

You can chat with surgery and radiation patients there...Gary

[gcb]

Sorry for the lengthy absence.

I went to University of Pittsburgh to meet with Dr. Lunsford.

Meeting went well very, very comfortable with him and the facility, both top notch.

Jamie, he supplied additional information on tumor re-growth potential. Dr. Lunsford said that of the approx 200,000 people treated with GK worldwide, there have only been 3 reported cases of a secondary malignant tumor developing.

Pretty good odds for me…

I went ahead and had Dr. Lunsford perform the procedure with NO issues or side effect at this time. I'll post my experience in the post treatment options section of this forum.

Folks, I can’t thank you enough for all your help, encouragement and willing to share both your thoughts and experiences.

Thank you.

[jamie]

Jamie, he supplied additional information on tumor re-growth potential. Dr. Lunsford said that of the approx 200,000 people treated with GK worldwide, there have only been 3 reported cases of a secondary malignant tumor developing.

Pretty good odds for me…

Thanks for the updated numbers. I guess it turns out there is even less chance of a second malignancy than we thought! I'm glad to hear you're procedure went well. I finished my CyberKnife two weeks ago. If your tumor was causing you pain, did it stop? Mine did. I had a persistant earache, especially in the morning, that was eliminated right after my treatment. That was the only symptom that bothered me and it is gone now. I hope you have the same resolution.

[gcb]

Jamie
Luckily my tumor wasn’t causing any pain, the only issue I have is minor hearing loss and a very slight balance issue periodically. The only post treatment problem I had was a mild pressure headache for a few days, I assume this was caused by the head frame. Man did that thing hurt while they were putting it on. Once attached no problems though. At this point everything is good; we’ll see how the 6 month MRI looks.

[jamie]

The only post treatment problem I had was a mild pressure headache for a few days, I assume this was caused by the head frame.

I had the same issue, but I didn't have a headframe. The doc said it was due to swelling and it only lasted a few days for me as well. Ibuprofen 3 x day worked just fine to stop the headaches, didn't need steroids or anything. But the headaches are gone now. 

[okiesandy]

GB,

I am so glad you do not have AIED. There is really not 100% accurate way to know if you do.  I went on a 60 mg prednisone daily for 5 days then tapered. That was my second round. First time I stayed up nights and moved furniture and played on the computer. The next time almost ate the wall paper off the walls. Could not get enough food. Gained weight and every bone in my body hurt. When I went off I got acne of the scalp. I never had a pimple as a teenager. Here I am an old lady with acne. That to passed and all is well. No one knows how the AIED will respond over a lifetime. I really got more help with information from a homeopathic doctor. No more herbs with out knowing if the treat the immune system. Lots of things I can't take again. So far the hearing in the good ear is holding up and I have every reason to think I wil go a long time before another bout. Every time my ear is full or hearing garbled I panic. There is something called sympathetic hearing loss that happens after you lose hearing in the reamaining hearing ear. Treatment is the same. Hearing returns in about 75 to 80% of patients treated.

When I have surgery or CK I will have to go on them for a while again. I just hate to take them but, I would hate to lose hearing completely. Makes the loss of hearing in the AN ear seem insignificant compared to a possible loss in both ears. I have learned to deal with single sided deafness better than I thought I would. I do get really fatigued trying to understand some of what is going on around me. I just do the best I can with what I have and pray the hearing remains in the good ear.

[jiguana]

Hi,

I have had Gamma Knife for a 2cm AN. I am glad I chose this option.   I heard the same things from the standard surgeons, then I went to Dr Andrews at Thomas Jefferson Univ in Philly.  He does both traditional and radiosurgery.  I am 6 years post surgery and my tumor is considered hust a dead mass now.  I go for MRI's every two years and if there is no change in the next 4 years, I will be considered cured (the 10 year thing mentioned earlier). Dr Andrews also has a 99% success rate with this.  I have no side effects.. balance problems, etc.  I was riding my motorcycle the next week.  My hearing was shot prior to the GK so I don't consider hearing loss a side effect for me. 

Again, I am glad I went the radiation route.  It was right for me.  I wish you luck in your decision and I hope I was of help.

Joe

[katmumof3]

hello everyone, i'm a first timer here


 I'm 28 and have an AN 2 cm's, touching the brain stem.  I have a little buzzing in my ear and slight vertigo, but otherwise perfect hearing and almost perfect balance, no facial paralysis.

I really wanted to go with the radiosurgery, the microsurgery has so many side effects, and can last a very long time, and i'm an at home mum of 3 boys.

Doc says it's too risky because of it touching my brain stem.  If only i'd found out about it a year earlier....lol


does anyone know the risks associated with radiosurgery on an AN touching the brain stem?  I'd be very interested to know, lol, kinda freaking about the whole 3-6 months recovery...